Son Diagnosed with Type 1 Diabetes

My nephew was diagnosed at age 2, so to echo another poster, things will get better and calm down. You will be able to go back to work, and this will get under control. My nephew is now 14 and can do all of his monitoring and treatments himself, doesn't need assistance from anyone, and is living a normal life. He's involved in sports and if you didn't know he had diabetes, you couldn't tell!

Hi B.! I am so sorry that your family is going through this. My 4 year old daughter and 7 year old son both have Type 1 diabetes, as does my husband.

You won't qualify for SSI, but you may be able to contact your insurance company to see if they have grants that will cover part of your premium.

As far as going back to work, only you know what is best for your son. People don't realize how serious Type 1 can be, and how ignorant the general medical community is about the disease. But there are ways that you can return to work.
#1. Your school should have the number of your pediatric endocrinologist, and the nurse would be able to call that number and get advice on how to handle blood sugars, lows, etc.
#2. Make a support team. We are training my parents how to deal with the detailed care. Most things can be handled over the phone, now. We also have 2 close friends who we will be training to insert an insulin pump site. The more people you have on your "team" that you can trust, the better. My MIL and my sisters are also a good resource for us. We can leave town for the day and know that our kids will be safe!

JDRF is a great resource for support groups and you can meet other families dealing with the disease through Walk for the Cure and other events.

Lastly, no one can tell you that things will "get back to normal". There is no normal with type 1 diabetes. There are phases of ups and downs, and you learn to roll with it, but it's still a very difficult disease to manage, especially for growing kids. You just have to find a new normal and do what works for you.

My heart goes out to you. My daughter was diagnosed at age 19 months and I don't think I've had a good night's sleep since. We have great days and horrible days and absolutely terrifying days. Our kids will have a wonderfully normal life, but parents have to take up the slack to make that happen.

Cheers to our kids! Type 1 won't hold them back! My husband may have type 1 but he's super healthy, is a successful business owner and an athlete. A family friend has 2 kids with diabetes and those kids are state tennis champions and never let diabetes define them or hold them back.
Blessings on you and your family!

Lots of hugs to your son and you. My daughter was diagnosed at 12 and is 28 now. It has been so much harder than others know. I dont think anyone but parents of diabetics ever really understand how much goes into the daily life of a diabetic. Its never the same twice, and can suddenly be out of control with no warning and no reason. As much as schools claim they have a protocal for dealing with diabetic students we found them to be so difficult and misinformed at every turn. She was allowed to carry her glucometer with her, but not the lancets to test her blood. What good is the glucometer if she cant carry the very thing that makes it possible to get the blood out. She was permitted to carry the insulin, but not the syringes. What good is that? How do they expect her to give herself insulin without the syringe? We also live in an area where 1 nurse works at several schools and each school has its "day" when she is there. We were told we HAD to have a glucagon kit for emergencies but if our daughtger ever needed it, only the nurse was qualified to administer it. And where would she be that day at that time? Our daughter could be dead by time she would show up. I could go on and on. So working with the school is difficult at best but you have very little choice at this point. I just hope they have changed since she was in school and it wont be this way for your son. I suggest you subscribe to the magazine "Diabetes Forecast". You will find great ideas, new medical things and great advice. Look into the insulin pump also. It has helped in many ways but you need a dr who is really onboard with it. Most hospitals offer support and educational classes for diabetics but usually we find them to be geared toward type 2. I do want to say, being so young when diagnoised, you have a much better chance of controling his diet and routine, making it such a daily part of his life he will grow up not really knowing anything different. At 12, our daughter was already gaining some independance and it was really hard to pull her back and try to be in control of anything with her. She thought she already knew everything and didnt want to be told how to do anything.(still does) So, my heart goes out to you and your son.

I have to disagree with Krista P. My niece was diagnosed at 18 months (she's now 13), and my sister found so much ignorance in the schools surrounding type 1 that she could not trust them enough to return to work. There have been countless comments about her diet causing this, my sister should be blamed because she fed her too much candy, adults ( school nurses) comparing their type 2 to my niece's etc. It will get better, but strength to you as you go on this journey.

Ask the social worker at the hospital or the endocrinology clinic where your son is a patient. They may know of a support group for parents in your area or help you start one! They may also know about any financial assistance you may be eligible for. Good luck! Things will get better and you will settle down. Just remember that he is your son first, and he has diabetes--don't just see the diabetes first (although it can be overwhelming at first.) There are a lot of good resources on the JDRF.org website.

My niece was diagnosed with Type 1 when she was 3 and I can assure you that things will call down a little bit. She's amazingly self-sufficient at the age of 5 and will be off to Kindergarten in the fall with a comprehensive medical plan and a Section 504 plan in hand!

Call your local chapter of the Juvenile Diabetes Research Foundation. They have been an enormous support for our family and they will hook you up with a local family who will help you navigate the coming months.

As for school... why do you need to be available 24/7? Truthfully, unless the school does not have a nurse that's simply not true. The school nurse is completely qualified to test your child and administer insulin, if needed. Call the principal and request that a Section 504 meeting. Google Section 504 Accommodation plans and see what they are all about!

The school is obligated to make sure that your son can attend school without you! Please don't quit your job to be "on call"... you will find that he will adjust and the teachers and school staff will be quite accommodating if you work with them!

As for SSI, call your county Department of Social Services and schedule an appointment. They will help you determine whether or not you qualify for anything, including state-supported health insurance for your son!

Here is a link to the support forum for JDRF - there is a link here to find local chapters:

http://juvenation.org/p/juvenation_welcome.aspx

I'm kind of surprised that you have to be available to him 24/7. I know a few kids with Type 1 Diabetes and after the initial acute phase, the families have been able to get back to "normal" with both parents working, so maybe when things get under control and you get into a groove with managing the disease, you may be able to go back to work. If there is something unique to your case that means that you truly can't work, then yes you can apply for SSI. SSI for disabled kids is there to provide extra income when a parent can't work at all (or has to work a reduced schedule) to manage a child's chronic illness or disability. There has actually been a big thing in Massachusetts because there are thousands of families who have been collecting SSI for years due to ridiculous things such as a child being diagnosed with a speech delay in pre-school. The kids got speech therapy and are fine, but the families still get SSI. So you don't need to have a child with something drastic like cerebral palsy or cancer to qualify - if i were you and could document the need to be available to him at his current stage and age, I would definitely apply. The worst thing they can say to you is no.

A student I tutored for college test prep has Type 1 diabetes and she did a lot of work with the JDRF. It's a great organization with a lot of resources. She went to camp each summer for years and as a teen, was a camp counselor there. Her family really couldn't say enough about how great that organization is, so definitely get involved with your local chapter.

I hope that you are all able to settle into your new normal soon - this much be such a roller coaster for your family!

There is also a new nutritional product that was shown in clinical trials to reduce the fasting blood sugar 30%. It's been out for 2 years and the results continue to grow. Sometimes insurance will pick it up if the doctor prescribes it, but even if not, it will reduce the cost of medications because stabilizing the blood sugar level reduces the need for insulin and maybe can keep him out of the hospital. I can send you the clinical trial if you send me your email address - PM me if you like. I can give you the info to show to your doctor or nutritionist. The research scientist who headed the team was also on the team that developed ProSoBee formula, so he's world renowned in infant and children's nutrition, on the Board of Director for the Council for Responsible Nutrition, and has received many other accolades. Your doctors will have heard of him or at least can verify his credentials.